Ascending Aortic Dilation - Ascending Aortic Aneurysm

Posted by rory @rory, Apr 2, 2018

I was diagnosed in 2012 with ascending aorta dialation of 4.1 cm. In 2013 no change. Finally went back to dr in 2017 and echo showed 4.3 cm. 2 months later dr made me have a chest scan which read 4.5 cm. which is correct? Echo or scan? Dr wants me to have another in 6 months. Very stressful.

@cass57

Hello, @lisalucier Here we are in April. Not sure how this post works yet. I am new. Reading some posted here. Interesting. They found a 4.8 Ascending aneurysm with bicuspid valve last August. I have never had and issue and in pretty good shape at 57. I was working out everyday. Hikingquite a bit and other activities. Now down to zero and depressed. The echo test should 5cm, the CT scan showed up at 4.8 and the latest CT scan showed up at 4.95. Am I coming or going? Can this grow that fast? Another scan is set up for August or September. I have no idea what to think of this. I am told operation with be needed before 5.5cm. Is this factual? They can't even tell me the exact size. How does this work? And quite frankly, Anyway, to say this is a nightmare is an understatement. Any feedback out there?

Jump to this post

I feel your pain! I have AAA that has been measured from 3.7 to 4.9…..just got a scan this Am will get report around 3 pm. Up and down depressed and afraid to pick up anything, someone here told me not to pickup more than a jug of milk, been being careful. I wish they could just do damn surgery and get it over with!!!

REPLY
@cass57

Hello, @lisalucier Here we are in April. Not sure how this post works yet. I am new. Reading some posted here. Interesting. They found a 4.8 Ascending aneurysm with bicuspid valve last August. I have never had and issue and in pretty good shape at 57. I was working out everyday. Hikingquite a bit and other activities. Now down to zero and depressed. The echo test should 5cm, the CT scan showed up at 4.8 and the latest CT scan showed up at 4.95. Am I coming or going? Can this grow that fast? Another scan is set up for August or September. I have no idea what to think of this. I am told operation with be needed before 5.5cm. Is this factual? They can't even tell me the exact size. How does this work? And quite frankly, Anyway, to say this is a nightmare is an understatement. Any feedback out there?

Jump to this post

welcome to the club. It was said to keep stress down and after the shock of this and being in good health i lightened up on weights to nothing over 50 pounds, biking and gardening and golf etc, and then this virus which goes after older people. So stress is tough to keep under control. Find its better to not watch the hateful news. My scan is 4.8 last summer . Had it done locally in Toledo and then visited Cleveland Clinic. Not sure i will return to Cleveland which seems to be a hot bed for the virus. Good luck

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@lynetteirizarry

I feel your pain! I have AAA that has been measured from 3.7 to 4.9…..just got a scan this Am will get report around 3 pm. Up and down depressed and afraid to pick up anything, someone here told me not to pickup more than a jug of milk, been being careful. I wish they could just do damn surgery and get it over with!!!

Jump to this post

problem is what happens during surgery which is no sure thing. Stroke etc. Relax, turn off the news, bike, walk, garden, hell i am 79 and feel like 50. Only problem is what we all have that are sharing this communication.

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@cobweb

welcome to the club. It was said to keep stress down and after the shock of this and being in good health i lightened up on weights to nothing over 50 pounds, biking and gardening and golf etc, and then this virus which goes after older people. So stress is tough to keep under control. Find its better to not watch the hateful news. My scan is 4.8 last summer . Had it done locally in Toledo and then visited Cleveland Clinic. Not sure i will return to Cleveland which seems to be a hot bed for the virus. Good luck

Jump to this post

Some club eh. Sounds like you have the right plan to stay healthy as one would say. Cheers and keep it up.

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@cobweb

welcome to the club. It was said to keep stress down and after the shock of this and being in good health i lightened up on weights to nothing over 50 pounds, biking and gardening and golf etc, and then this virus which goes after older people. So stress is tough to keep under control. Find its better to not watch the hateful news. My scan is 4.8 last summer . Had it done locally in Toledo and then visited Cleveland Clinic. Not sure i will return to Cleveland which seems to be a hot bed for the virus. Good luck

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@cass57, there are certainly good cardiologists in the major urban centers in Canada. However, if you're considering out of country options, you may wish to inquire at Mayo Clinic as well as Cleveland Clinic. Here's the link to Information for Canadian Patients https://www.mayoclinic.org/canada

@degarden_girl is quite right that measurements can vary slightly depending on the imaging type i.e., echo vs CT scan.

@cobweb is on to something about relax, turn off the news and do moderate physical activity. According to this article https://www.mayoclinic.org/diseases-conditions/abdominal-aortic-aneurysm/symptoms-causes/syc-20350688 regular exercise is good:
"Get regular exercise. Try to get at least 150 minutes a week of moderate aerobic activity. If you haven't been active, start slowly and build up. Talk to your doctor about what kinds of activities are right for you."

When it is time for surgery depends on multiple factors, not just size. "Repair is generally recommended if your aneurysm is 1.9 to 2.2 inches (4.8 to 5.6 centimeters) or larger or if it's growing quickly. Also, your doctor might recommend surgery if you have symptoms such as stomach pain or you have a leaking, tender or painful aneurysm."

It surely is a club you never hoped to join. But here you are and I'm glad you found the Connect community. Keep asking questions. You can see people are quick to respond. 🙂

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Thanks for the kind words to all. Canada has really good heart surgeons. But they have only one procedure here, full chest sternotomy. I am looking for that miracle with getting the 4-5 inch incision vs. full breast bone incision. I have read a lot about this. Less invasive as possible, but I think I have no prayers to finding alternative due to also having BAV. Its a long story as to why I want this, serious car accident 20 years ago. But for the time being, I am staying active. I have been very sports active all my life and at 57 years of age, I toned down the muscle building by cutting heavy weights and aggressive workouts. Everyday doing anywhere from 45 mins to 1.5 hours exercise, walk, bike, lite weights etc…. My BP has always been perfect. I have always eaten well, so no issues. Funny how that works, stay healthy all your life but you still get something like this. I read that about 6.5% of ascending Aneurysm at about 5.8cm rupture.Well lets see what I decide to do. I will still do the exercise of seeing if I can get what I want for operation. Cheers to all. Stay safe . Really need this support. Any other hopeful and kind words are always welcomed.

Liked by degarden_girl

REPLY
@cass57

Thanks for the kind words to all. Canada has really good heart surgeons. But they have only one procedure here, full chest sternotomy. I am looking for that miracle with getting the 4-5 inch incision vs. full breast bone incision. I have read a lot about this. Less invasive as possible, but I think I have no prayers to finding alternative due to also having BAV. Its a long story as to why I want this, serious car accident 20 years ago. But for the time being, I am staying active. I have been very sports active all my life and at 57 years of age, I toned down the muscle building by cutting heavy weights and aggressive workouts. Everyday doing anywhere from 45 mins to 1.5 hours exercise, walk, bike, lite weights etc…. My BP has always been perfect. I have always eaten well, so no issues. Funny how that works, stay healthy all your life but you still get something like this. I read that about 6.5% of ascending Aneurysm at about 5.8cm rupture.Well lets see what I decide to do. I will still do the exercise of seeing if I can get what I want for operation. Cheers to all. Stay safe . Really need this support. Any other hopeful and kind words are always welcomed.

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@cass57 Hi. My understanding is that those being offered the less invasive repair of an ascending aortic aneurysm (the endovascular stent) are patients who for age or other health issues are thought to be unable to tolerate the full open chest surgery and recovery. There must be reasons why this procedure is not the gold standard for repair but I haven't been able to find that specific discussion in my searches. I do wonder if the endovascular stent repair has a shorter lifespan than the full open chest repair so is offered to older patients who likely won't outlive the repair.

It is possible that during a full open chest repair that the BAV will also be replaced. I know, this is mind boggling to even think about.

My hope is that if I can maintain my current situation that I will live long enough for a new easier procedure to be developed or I will qualify for the endovascular stent repair. My concern is that the aortic valve is leaky and the surgeon will want to replace that at the same surgery and therefore I will be required to have the full open chest surgery. But who knows — I might be able to avoid any kind of repair and die from something else entirely, at a very advanced age.

In the meantime, I live my life mindful of the recommended limitations on lifting and other exercises or activities that might strain the aneurysm and then I just carry on. Beyond that, I won't let these conditions control me. However, you are significantly younger than I am and if your aneurysm is growing you may be more likely to need this surgery. I suggest you connect with an outstanding vascular surgeon so if the time comes that surgery is recommended, you will have faith in the person advising you and providing your care.

I send you all good wishes.
Donna

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@cass57

Thanks for the kind words to all. Canada has really good heart surgeons. But they have only one procedure here, full chest sternotomy. I am looking for that miracle with getting the 4-5 inch incision vs. full breast bone incision. I have read a lot about this. Less invasive as possible, but I think I have no prayers to finding alternative due to also having BAV. Its a long story as to why I want this, serious car accident 20 years ago. But for the time being, I am staying active. I have been very sports active all my life and at 57 years of age, I toned down the muscle building by cutting heavy weights and aggressive workouts. Everyday doing anywhere from 45 mins to 1.5 hours exercise, walk, bike, lite weights etc…. My BP has always been perfect. I have always eaten well, so no issues. Funny how that works, stay healthy all your life but you still get something like this. I read that about 6.5% of ascending Aneurysm at about 5.8cm rupture.Well lets see what I decide to do. I will still do the exercise of seeing if I can get what I want for operation. Cheers to all. Stay safe . Really need this support. Any other hopeful and kind words are always welcomed.

Jump to this post

Hi @cass57 and others. I've been reading Mayo Clinic comments for 4 months and have found them very helpful; now it's my turn to tell you about my experience and hope you get something from it.

Two years ago my family doctor heard a murmur and sent me for an echo. In those 2 years I had more echos, a stress test, a TEE and a heart cath. (TEE is an echo down the throat) The conclusion was that I had a bicuspid aortic valve (BAV) and an aneurysm on my ascending aorta. The aneurysm was first measured at 4.4, then 4.6 Because I was 67, female, and weighed only 117 pounds, they told me I needed to have surgery.

In those 2 years I went through a whole lot of emotions, I lost sleep – I was also in serious denial (I felt good – I worked out – my blood pressure was good, I ate well. How could I have a problem?) And the thought of open heart surgery was Really Scary. So I did a lot of research and talked to my family.

Bicuspid Aortic Valves are inherited. Two percent of the population is born with a BAV. I found out they show up in my family quite often. BAVs seem to work well until we get older. They are associated with "connective tissue disorder" so that as we age, the tissue doesn't take the stress as well. If you want more information on BAVs (and a better explanation than mine), a really good website is bicuspidfoundation.org. You'll find lots of information on BAVs and aneurysms.

So – after research and serious thought I decided I would have the surgery to repair or replace the BAV and to repair the aneurysm. I knew it would be the full chest incision. I had read many positive comments on these pages from people who had had surgery and were doing well; I also knew about 7 people who had undergone surgery and were walking around today – just fine. (My brother and aunt included.) Those comments encouraged me to have the surgery. I also knew I would go to one of the best hospitals I could. Since I'm from Ohio originally, I went to the Cleveland Clinic.

I called them, got connected and had very good instructions on what to do (I had to get medical records and test results sent to them). I started the process in the fall; I had surgery 4 months later. They assigned me to a wonderful surgeon.

The thought of open heart surgery is very scary. It really makes you review your life and think about who and what is really important. But I felt I was going to one of the best places I could. I put my trust in them and they came through beautifully.

The whole procedure at Cleveland Clinic is very organized – I went up a week early and had tests (CT scan, echo, EKG, lab work, etc). On Monday I had surgery. The surgeon was able to repair the BAV, not replace it. He also repaired the aneurysm. I left the hospital on Friday.

I want to say as far as credit – the surgeon is very important. But – so is the rest of the staff. There is the anesthesiologist, there is the person who opens you and closes you up, the person who puts in all the tubes, people are monitoring your heart rate and other systems. The nurse I had in ICU made me feel so positive that all was well. The whole team is very critical and I thank Cleveland Clinic for being outstanding.

btw, I'm sure Mayo Clinic and other hospitals also do great work. It is important to go to a very good hospital.

As far as recovery, I'm amazed at how well and how fast I have healed. I think a lot of credit goes to Cleveland Clinic. I was also in good shape before the surgery, I eat well, I had very few other problems. I think that helped. Because of COVID19 I have had to skip in person appointments with the doctor – we've had phone calls. I also have not started the cardiac rehab – but hopefully I can get to that next month.

I wish you the best of luck, cass57. It is a hard decision but keep talking to people and do the research. And do know that test results can vary depending on who is interpreting it, and that doctors may have different opinions on how to proceed. Take it all in and hopefully you can come to a good decision (although the virus has changed surgery scheduling).

One last comment – as suggested earlier, I also do meditation. The app Calm is wonderful.
Best of luck to you.

Liked by steinarama

REPLY

Hello gaile19. Very nice and encouraging post here. I am indeed in the situation where I don't accept this. I have always enjoyed great health. Not because I wanted to live longer, but just because I enjoyed it. Controls stress and also controls my pain i have daily due to car accident from 20 years ago. My pickup truck hit a 1900/lb moose at 65mhr. I need these stories to help get through this unexpected issue. I am one who deals with his own pains and problems. This is more difficult in regards to the family and the emotions they will be going through again. In Canada its slow process. Not really much compassion from my experiences. I know of several people that have had open heart, they all have great lives. When I see the test reports changing from one to the other, I question a lot. We will see what will happen as I move forward. Looking at the US clinics for options. Only issue is the extreme cost for this operation. But whats money if you can't live your life. Thanks again for your story, I needed this to help since I talk very little with people around me. Everybody has their only problems. You stay safe and healthy.

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@gaile19

Hi @cass57 and others. I've been reading Mayo Clinic comments for 4 months and have found them very helpful; now it's my turn to tell you about my experience and hope you get something from it.

Two years ago my family doctor heard a murmur and sent me for an echo. In those 2 years I had more echos, a stress test, a TEE and a heart cath. (TEE is an echo down the throat) The conclusion was that I had a bicuspid aortic valve (BAV) and an aneurysm on my ascending aorta. The aneurysm was first measured at 4.4, then 4.6 Because I was 67, female, and weighed only 117 pounds, they told me I needed to have surgery.

In those 2 years I went through a whole lot of emotions, I lost sleep – I was also in serious denial (I felt good – I worked out – my blood pressure was good, I ate well. How could I have a problem?) And the thought of open heart surgery was Really Scary. So I did a lot of research and talked to my family.

Bicuspid Aortic Valves are inherited. Two percent of the population is born with a BAV. I found out they show up in my family quite often. BAVs seem to work well until we get older. They are associated with "connective tissue disorder" so that as we age, the tissue doesn't take the stress as well. If you want more information on BAVs (and a better explanation than mine), a really good website is bicuspidfoundation.org. You'll find lots of information on BAVs and aneurysms.

So – after research and serious thought I decided I would have the surgery to repair or replace the BAV and to repair the aneurysm. I knew it would be the full chest incision. I had read many positive comments on these pages from people who had had surgery and were doing well; I also knew about 7 people who had undergone surgery and were walking around today – just fine. (My brother and aunt included.) Those comments encouraged me to have the surgery. I also knew I would go to one of the best hospitals I could. Since I'm from Ohio originally, I went to the Cleveland Clinic.

I called them, got connected and had very good instructions on what to do (I had to get medical records and test results sent to them). I started the process in the fall; I had surgery 4 months later. They assigned me to a wonderful surgeon.

The thought of open heart surgery is very scary. It really makes you review your life and think about who and what is really important. But I felt I was going to one of the best places I could. I put my trust in them and they came through beautifully.

The whole procedure at Cleveland Clinic is very organized – I went up a week early and had tests (CT scan, echo, EKG, lab work, etc). On Monday I had surgery. The surgeon was able to repair the BAV, not replace it. He also repaired the aneurysm. I left the hospital on Friday.

I want to say as far as credit – the surgeon is very important. But – so is the rest of the staff. There is the anesthesiologist, there is the person who opens you and closes you up, the person who puts in all the tubes, people are monitoring your heart rate and other systems. The nurse I had in ICU made me feel so positive that all was well. The whole team is very critical and I thank Cleveland Clinic for being outstanding.

btw, I'm sure Mayo Clinic and other hospitals also do great work. It is important to go to a very good hospital.

As far as recovery, I'm amazed at how well and how fast I have healed. I think a lot of credit goes to Cleveland Clinic. I was also in good shape before the surgery, I eat well, I had very few other problems. I think that helped. Because of COVID19 I have had to skip in person appointments with the doctor – we've had phone calls. I also have not started the cardiac rehab – but hopefully I can get to that next month.

I wish you the best of luck, cass57. It is a hard decision but keep talking to people and do the research. And do know that test results can vary depending on who is interpreting it, and that doctors may have different opinions on how to proceed. Take it all in and hopefully you can come to a good decision (although the virus has changed surgery scheduling).

One last comment – as suggested earlier, I also do meditation. The app Calm is wonderful.
Best of luck to you.

Jump to this post

Allow me to share my experience to, I hope, alleviate some of your very reasonable concerns.
At age 71 ( healthy and in good condition), an echo identified a 49mm dilated aortic root. After doing a lot of due diligence, I decided on surgery. The surgery entailed radical thoracic resection, a reconstruction of the aortic valve, and a radical graft of the ascending aorta up to the aortic arch. While “under the hood” my surgeon also performed a maze ablation. My aorta diameter turned out to be an actual 55mm. I was on bypass for almost 8 hours. I spent 4 days in cardio ICU and 1 day and overnight on a ward. I started taking short walks the day after I returned home and, despite a few “kerfufels” was pretty much recovered in 30 days. I am now approaching 75 years old and doing well. So, my advice is that if you need the surgery ( a BAV and your current diameter seems to indicate) don’t let the seriousness deter you. Get a good surgeon and a top notch hospital ( I think the latter is more important than the former) and go for it.. It is not a “stroll in the park” but it’s not as bad as you fear. You can do it. Good luck and God Bless.

Liked by degarden_girl

REPLY
@gaile19

Hi @cass57 and others. I've been reading Mayo Clinic comments for 4 months and have found them very helpful; now it's my turn to tell you about my experience and hope you get something from it.

Two years ago my family doctor heard a murmur and sent me for an echo. In those 2 years I had more echos, a stress test, a TEE and a heart cath. (TEE is an echo down the throat) The conclusion was that I had a bicuspid aortic valve (BAV) and an aneurysm on my ascending aorta. The aneurysm was first measured at 4.4, then 4.6 Because I was 67, female, and weighed only 117 pounds, they told me I needed to have surgery.

In those 2 years I went through a whole lot of emotions, I lost sleep – I was also in serious denial (I felt good – I worked out – my blood pressure was good, I ate well. How could I have a problem?) And the thought of open heart surgery was Really Scary. So I did a lot of research and talked to my family.

Bicuspid Aortic Valves are inherited. Two percent of the population is born with a BAV. I found out they show up in my family quite often. BAVs seem to work well until we get older. They are associated with "connective tissue disorder" so that as we age, the tissue doesn't take the stress as well. If you want more information on BAVs (and a better explanation than mine), a really good website is bicuspidfoundation.org. You'll find lots of information on BAVs and aneurysms.

So – after research and serious thought I decided I would have the surgery to repair or replace the BAV and to repair the aneurysm. I knew it would be the full chest incision. I had read many positive comments on these pages from people who had had surgery and were doing well; I also knew about 7 people who had undergone surgery and were walking around today – just fine. (My brother and aunt included.) Those comments encouraged me to have the surgery. I also knew I would go to one of the best hospitals I could. Since I'm from Ohio originally, I went to the Cleveland Clinic.

I called them, got connected and had very good instructions on what to do (I had to get medical records and test results sent to them). I started the process in the fall; I had surgery 4 months later. They assigned me to a wonderful surgeon.

The thought of open heart surgery is very scary. It really makes you review your life and think about who and what is really important. But I felt I was going to one of the best places I could. I put my trust in them and they came through beautifully.

The whole procedure at Cleveland Clinic is very organized – I went up a week early and had tests (CT scan, echo, EKG, lab work, etc). On Monday I had surgery. The surgeon was able to repair the BAV, not replace it. He also repaired the aneurysm. I left the hospital on Friday.

I want to say as far as credit – the surgeon is very important. But – so is the rest of the staff. There is the anesthesiologist, there is the person who opens you and closes you up, the person who puts in all the tubes, people are monitoring your heart rate and other systems. The nurse I had in ICU made me feel so positive that all was well. The whole team is very critical and I thank Cleveland Clinic for being outstanding.

btw, I'm sure Mayo Clinic and other hospitals also do great work. It is important to go to a very good hospital.

As far as recovery, I'm amazed at how well and how fast I have healed. I think a lot of credit goes to Cleveland Clinic. I was also in good shape before the surgery, I eat well, I had very few other problems. I think that helped. Because of COVID19 I have had to skip in person appointments with the doctor – we've had phone calls. I also have not started the cardiac rehab – but hopefully I can get to that next month.

I wish you the best of luck, cass57. It is a hard decision but keep talking to people and do the research. And do know that test results can vary depending on who is interpreting it, and that doctors may have different opinions on how to proceed. Take it all in and hopefully you can come to a good decision (although the virus has changed surgery scheduling).

One last comment – as suggested earlier, I also do meditation. The app Calm is wonderful.
Best of luck to you.

Jump to this post

May I ask who was your surgeon in Cleveland? Thank you so much.

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@yurkosolhan

Allow me to share my experience to, I hope, alleviate some of your very reasonable concerns.
At age 71 ( healthy and in good condition), an echo identified a 49mm dilated aortic root. After doing a lot of due diligence, I decided on surgery. The surgery entailed radical thoracic resection, a reconstruction of the aortic valve, and a radical graft of the ascending aorta up to the aortic arch. While “under the hood” my surgeon also performed a maze ablation. My aorta diameter turned out to be an actual 55mm. I was on bypass for almost 8 hours. I spent 4 days in cardio ICU and 1 day and overnight on a ward. I started taking short walks the day after I returned home and, despite a few “kerfufels” was pretty much recovered in 30 days. I am now approaching 75 years old and doing well. So, my advice is that if you need the surgery ( a BAV and your current diameter seems to indicate) don’t let the seriousness deter you. Get a good surgeon and a top notch hospital ( I think the latter is more important than the former) and go for it.. It is not a “stroll in the park” but it’s not as bad as you fear. You can do it. Good luck and God Bless.

Jump to this post

Glad you got through this very well. I can only hope to do as well. Here in Canada, I am limited with my options of who and where to get this done. My last encounter in the ICU here, was not a memorable one. I am in good health, well other than this time bomb they found. I am trying to find out cost to have this done in the US. And I need to sell myself on either to do this or leave it to the powers that be. Cheers and stay strong, Godspeed.

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@lynetteirizarry

I feel your pain! I have AAA that has been measured from 3.7 to 4.9…..just got a scan this Am will get report around 3 pm. Up and down depressed and afraid to pick up anything, someone here told me not to pickup more than a jug of milk, been being careful. I wish they could just do damn surgery and get it over with!!!

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hi @lynetteirizarry So did you get your results?

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After I experienced a heart attack 12 years ago(at the age of 59) the cardiac catheterization revealed a 4.5 cm aneurysm on my ascending aorta. I opted to have a graft repair and that was performed less than six months later (my heart attack was considered to be as a result of ‘broken heart syndrome’ so my recovery was fairly quick). After a few months of recovery from the surgery I was beginning to feel pretty much like my old self again. And after that other than being thankful every day I don’t need to think about this experience except to get an ECHO and/or an MRA once every couple of years.

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